MADISON – For the children who survive childhood cancer, the worry about their health doesn't end with treatment. As they grow, they will continue to have unique health issues, which is why long-term follow-up care is so critical.

"Many adults who had cancer as a child may experience health concerns as adults but not realize it is linked to their childhood illness," said Andrea Urbon, clinical social worker with UW Health's Pediatric Hematology and Oncology program.

Feeling Out-of-Sync

The concerns go beyond the physical and can include emotional problems and even post-traumatic stress disorder. Patients may experience something as subtle as feeling "out-of-sync" with peers, sleep problems, depression, even relationship problems.

"The problem is that without long-term follow-up care, cancer survivors may never make the connection with their prior illness," said Urbon.

Urbon related the story of a former patient who was treated at the age of one. Now an adult, she had recurring anxiety dreams of being in a dark tunnel. After putting the pieces together, Urbon and the patient figured out that when the patient was receiving treatment as an infant, she would be wheeled on a gurney through a tunnel to get from the patient room to the treatment areas. The tunnel she described in her dreams was the same.

"Patients who experienced their illness as infants may not even remember being ill," said Peggy Possin, RN, Caring for Life Clinic coordinator. "For others, they may be uncomfortable dealing with such a painful topic."

Urbon added, "Many insurance companies do not cover care that is not treatment-oriented and for some patients, they can't afford a visit or are afraid they're going to have to have a scan that can costs thousands."

Becomming Their Own Advocate

A primary goal of the Caring for Life Clinic, explained Possin and Urbon, is to help patients become their own health advocates - to be fully informed about their condition so they can ensure they receive the proper care in the future.

"While their children are undergoing treatment, parents are obviously heavily involved and advocate for their child's health needs," commented Possin. "As the kids finish treatment and move beyond it, we try to help them learn how to communicate for themselves and give them the tools they need so as they become adults, they are prepared to manage their health."

When a former patient does attend the clinic, Diane Puccetti, MD and Sharon Frierdich, PNP, conduct an extensive health evaluation. Possin then gives patients a thorough cancer-treatment summary, including details about their illness and recommendations for the type of follow-up care they should receive in the future.

"The list details the disease, treatments, medications, doses, surgeries, what future concerns there might be as a result of the treatments – everything a patient would need to know," explained Possin.

This summary is given to patients as well as any of their health care providers. While most long-term cancer survivors don't develop serious complications, having the list, being aware of potential concerns and maintaining routine check-ups can ensure any possible problems are caught early.

Understanding Long-Term Implications

The clinic does not replace primary care providers. Most patients transition out of the clinic by age 25. And when they leave, they are well prepared to help their own primary care provider care manage their health needs.

"We try to teach them that to stay feeling great, they need to make smart choices about their health," said Possin, "including lifestyle choices such as not smoking, limiting alcohol, managing their weight, eating a healthy diet and exercising."

The clinic also helps patients understand the long-term implications of their treatment, particularly as they think about starting families of their own.

"Depending on the age at which a child was sick and the type of treatment they received, their reproductive health may be affected," said Possin. "We try to explain to patients what that means and what steps they may need to take."

One resource that Possin and Urbon use is the CureSearch Organization's website. CureSearch is a private foundation that is part of the Children's Oncology Group (COG), a consortium of childhood-cancer research institutions. The American Family Children's Hospital is a member of COG. The CureSearch website lists extensive information for cancer survivors based on the disease and age at which a person was ill. It can even be a useful resource for primary care physicians.

"The medical community is entering new territory as survivors continue to age," said Possin. "We are dealing with greater numbers of survivors and survivors living longer. As a result we continue to learn more about the long-term effects of the illness and treatments."

Dealing with an illness can often cause patients to feel helpless or out of control. Learning more about their illness and becoming their own advocate can make a significant difference.

"The illness will always be part of their life," concluded Urbon. "Acquiring the knowledge and taking charge of their health is one way they can take control back again."